Thursday, June 27, 2013

It has been one week since Tayta's revision surgery and tonight we are packing our bags, preparing for our drive to Chicago in the morning and our flight to Jordan tomorrow afternoon. Kristen had her post-op appointment with Dr. Siebert yesterday; he removed her stitches and told her that she looks great. I agree. Residual swelling should subside over the next six weeks.

At our last dinner in the Madison Ronald McDonald House, we met the Melendez family. Kristen, with her natural social astuteness, noticed them first, noting that their son appeared to suffer from Parry-Romberg Syndrome. We introduced ourselves and asked if they were here to see Dr. Siebert. When they understood the connection and we explained that Tayta had just undergone her second surgery with Dr. Siebert, an instant bond was formed. They were so happy to meet us. Though they had been in contact with other PRS families, they had never met another PRS patient in person, let alone anyone who had undergone surgery with Dr. Seibert.
Tayta talked with Diego--he was concerned about the pain he would feel and Tayta explained how all the nerves in his face would be cut. He would experience discomfort, but hopefully no pain.

Diego's dad and I took pictures of our PRS kids together. Tayta and I were touched by their family's story: Diego showed signs of PRS when he was two years old, and soon after Diego's father moved their family from their home in Puerto Rico to Orlando, Florida, so that they could find a treatment for Diego's PRS. Their long and persistent search and research ultimately led them to Dr. Siebert, and they are filled with hopeful anticipation as they prepare for Diego's first surgery on Monday. Diego's bone and tissue atrophy are quite severe so he'll likely have to undergo a few surgeries; he will need bone reconstruction as well as the free-flap tissue transplant that Tayta had.

Please take a moment to visit the blog which Diego's family has set up on his behalf. You can read more of his story and meet his family (in Spanish). While God has provided for most of the expense of Tayta's surgery via our insurance coverage, not all families enjoy this benefit and must raise money via donations to cover the cost of these expensive surgeries. Please consider donating and praying for Diego and his family on Monday as he undergoes his first surgery. We will be praying and cheering for him back in Mafraq, Jordan!

Friday, June 21, 2013

For nearly a year, Tayta has been sporting the look of someone who just had her wisdom teeth removed on the left side of her mouth, and she has done it with grace and confidence; confidence that came not only with knowing that the extra tissue in her face would eventually be removed, but confidence that God has called her His child and has given her a purpose for living, a purpose which did not depend on the symmetry of her face.

Many of you know of Tayta's diagnosis with Parry Romberg Syndrome, a rare autoimmune disease which causes the tissue, and sometimes the bones, on one side of the face to atrophy. I have written a few posts about Tayta's journey with this disease and about her free-flap tissue transplant surgery which took place last August. You can read those here, beginning at the bottom of the page. (I include these again as these posts have put me in touch with others who have children with PRS and I'd like to share information about Tayta's treatment which might be helpful to others.)

Tayta expected that she would have to wait until next summer, our regularly scheduled time to visit the States, to have the revision surgery, in which the surgeon would complete the cosmetic aspects of her treatment, but God provided the means for Tayta and I to travel to Madison, Wisconsin this week so that she could have the surgery sooner than later. An extra bonus of our trip was a visit with Oldest Daughter, living in Evanston. She treated us to a wonderful performance of the Chicago Symphony Orchestra, but the best part was spending time together and being there to help her move out of her apartment for the summer. God has been very generous with us!

Here we are, packed and ready to fly out of Amman's new international airport. We're also trying our hand at taking pictures with my tablet--I like my camera better.

Tayta's surgery took place yesterday morning: it was a three hour surgery in which her surgeon "de-bulked" her cheek, took a couple stitches above her left eye to correct the pulled skin, and filled in her left lip, using tissue from her right lip. The picture below shows just how great Tayta is looking several hours post-op.

One day post-op, the eye and lip swelling have increased and there is more discoloration of Tayta's skin, i.e. bruising, but that is to be expected with such a procedure. Her surgeon predicts a six-week recovery period. While this surgical intervention isn't technically a cure for PRS, it has arrested the affects of PRS in every person who has undergone a free-flap live tissue transplant.

Our hearts are overwhelmed with gratitude to God for providing this surgical option for Tayta and for the many friends, old and new who have helped us, cared for us, and prayed for us along the way. Thank you!

I will leave you with some wise advice from Tayta, given to me this afternoon: "Don't ever have plastic surgery unless you have to."

Friday, June 07, 2013

Yesterday Active Son needed a ride to Jerash where he was meeting up with a physical therapist to do some shadowing. Jerash is about a 40 minute drive from Mafraq and the bus was a hot, lengthy possibility for Active Son, but since I love the country back-road drive from Mafraq to Jerash and I love spending time with Active Son while he is home for the summer, I volunteered to drive. I took my camera as I had noticed a couple previously unobserved species of flowers along this road the week before.

Though summer doesn't officially begin until June 21st, summer weather has arrived and is here to stay without much variation: No.more.rain. We've had some temperatures in the high 30's (100 F) and look forward to the pleasantly cool days in the high twenties/low 30's (mid 80's). The landscape of the countryside now tends toward shades of brown, with a few spots of sage green and even fewer spots of color. Though many of the thistles have dried up, the purple Echinops is now beginning to bloom.

Echinops polyceras

This is my first observation of the Spotted Golden Thistle, which was blooming for about a half mile stretch along the road.

Scolymus maculatus

Golden Spotted Thistle

Riotous clumps of pink Convolvulus produce flowers that appear out of place in a harsh summer landscape. Their delicate pink blossoms belie their sturdy, drought resistant nature.

Convolvulus dorycnium

Convolvulus

And the caper bushes are blooming--there is no doubt that summer has arrived.

Caparis spinosa

Caper

The caper flowers, with their beautifully tinted, showy stamens always convince me that one photo is not enough.